KY has targeted efforts to mitigate risk factors and promote protective factors to reduce infant mortality. MCH has many initiatives and programs that support infant growth and development. The NPMs selected will continue for the next grant cycle and remain part of the selected measures from the 2020 needs assessment. These are:
- NPM # 4: A) Percent of infants who are ever breastfed, B) Percent of infants breastfed exclusively through six months
- NPM # 5: Percent of infants placed to sleep on their backs.
Infant Mortality:
Infant mortality remains the single best indicator of the health of a state. In KY, this continues as a priority need for the perinatal/infant health domain. The infant mortality rate in KY has not shown the degree of improvement seen in the national infant mortality rate. In 2018, the KY infant mortality rate mirrored the rate nationally. In this reporting period, KY rate dipped yet again to 5.6/1,000 live births. However, the rate nationally declined to 5.1/1,000 live births. While these numbers are encouraging, MCH remains vigilant with respect to infant mortality, as the rate for KY has hovered at an average of 6.6/1,000 live births for the past 4 years with a concern that this rate may not be stable in the coming years.
As shown in the figue, the total number of infant deaths has steadily decreased since 2016. This is in large part related to ongoing work addressing reducing preterm birth, promoting of safe sleep to reduce SUID cases, and reducing other preventable causes of infant death.
The map below illustrates infant mortality rate by geographic region. Historically, Eastern KY has seen higher rates of infant mortality, generally known to be associated with risk factors of smoking in pregnancy, NAS, preterm births, and teen pregnancies. Infant mortality appears to be more dispersed statewide with increased rates in the northern, south central, as well as in the west. The central and greater Louisville metro areas generally are richer in resources such as transportation and employment, as well as better access to healthcare, more hospitals, and providers and other supports for mothers and families. However, in the Bluegrass and KPDA districts (Lexington and Louisville respectively), there are still smaller communities, within the cities, with disparate outcomes for Black and Hispanic populations.
Additionally, the infant mortality rate for males is 5.7 per 1,000 live births and for females is 4.4 per 1,000 live births. A wide disparity between Caucasian and Black infants continues to impact our state, with a Black infant being almost three times as likely to die (12.1 per 1,000 live births for Black infants and 4.4 per 1,000 live births for Caucasian infants). These data are concerning given that over half the African American population in KY reside in the Louisville metro area, which generally have greater access to healthcare. MCH remains vigilant in reducing the infant mortality rate among this population.
As illustrated in the map below, the greatest number of live births to Black Mothers occur in the two largest urban areas in the state.
Title V continues to provide gap-filling services for pregnant KY women and their infants during the perinatal period as described in the woman’s health section. MCH has worked with the Cabinet’s Office of Health Policy to include the most recent recommendations from the National Guidelines for Perinatal Care in the State Health Plan. In addition, MCH provides Title V funding to the state’s two university-based regional perinatal centers to monitor outcomes of the highest risk infants and compare KY’s outcomes to national data.
Nationally, the Infant Mortality CoIIN has identified risk appropriate care for high-risk infants and mothers, safe sleep, breastfeeding, prematurity and EED prevention, smoking cessation, and social determinants of health as primary strategies for addressing infant mortality. KY MCH participated in each of these CoIIN projects to bring best practices to our state’s efforts in these areas. Beginning in 2018 and continuing to current day, KY has promoted education on implicit bias. KY joins with many partners to promote educational opportunities as will be explained throughout this section.
Breastfeeding Promotion
KY elected to focus on NPM #4: A) Percent of infants who are ever breastfed and B) Percent of infants breastfed exclusively through 6 months.
Various formats used to provide breastfeeding education to the public and health care providers include distribution of handouts, advertisements through regional/local billboards, internet, and movie theaters, classes, and community events. Additionally, this past year, a virtual conference was held to provide additional education and networking. Approximately 60 participants attended this two-day virtual conference. These annual events have the additional benefit for community level staff to network and share successful endeavors from across the state with each other. Four regional coalitions promoted breastfeeding through social media, and outreach.
From the 2018 PRAMS cohort, MCH learned:
- Four out of five mothers reported ever breastfeeding their infant, and 54% were still doing so at the time they were surveyed.
- Four out of five mothers report getting their breastfeeding information from their primary care physician.
- The major barrier to breastfeeding initiation is mother’s desire not to, but it is unclear why this occurs.
Ten Steps to Successful Breastfeeding
KY adopted the evidence-based practice: Ten Steps to Successful Breastfeeding Promotion to improve breastfeeding rates. To reduce barriers for incorporation of each step into practice and policy, regional breastfeeding coordinators provide education, training, and support to hospitals. For hospitals that wish to obtain Baby Friendly Hospital designation, they must include all steps in practice and policy. The KY WIC office surveyed birthing hospitals to determine what assistance or technical support would be most beneficial to increase the number of steps implemented and to determine how many were seeking a Baby Friendly Hospital designation. In 2020, due to COVID-19 there was limited outreach and breastfeeding promotion to hospitals.
Breastfeeding Initiation rates showed a steady increase, a success for KY’s effort. Rates increased from 55.9% in 2009 to 71.6% in 2019. Over the past few years, KY breastfeeding efforts to promote breastfeeding in the hospitals and interventions to promote kangaroo care and breastfeeding education and support were the activities responsible for the improvement in breast feeding rate.
KY also has better rates of initiation with older mothers and higher levels of education. While initiation rates are better, areas of KY with higher rates of infant mortality have smaller rates of breastfeeding initiation. Measuring duration rates continues to be difficult and the rate for mothers who continue to breastfeed their 6-month-old infants has increased to 44.5% reported for 2017 births (Centers for Disease Control, 2020).
As shown in the map below, the areas with low breastfeeding rates are those in the eastern part of KY with similarly poor maternal outcomes.
Even though improvements in breastfeeding have been made over time, KY remains well below the nation (48.6%) in terms of the percent of mothers who breastfed their infants at six months of age.
Regional breastfeeding coordinators provide breastfeeding training, technical support, and education to hospitals. They have community-wide focus reaching health departments, nurses, and college and high school students. These trainings promote and encourage best practices, breastfeeding duration, and accessing available resources, providing supports after birth for mothers to be able to return to school or work. The WIC Program staff, and Regional breastfeeding coordinators provide support to birthing hospitals to increase the number implementing kangaroo care in their facilities. Currently, approximately 95% of KY’s birthing hospitals have implemented kangaroo care. Due to COVID-19, the Regional breastfeeding coordinators were unable to provide community wide education, breastfeeding training, breastfeeding education, and technical support to hospitals.
WIC participants may receive electric, single user, and manual breast pumps to support breastfeeding duration. Over 100 health professionals completed the education modules reinforcing breastfeeding promotion, education, and three-step counseling. Approximately 150 individuals completed an online breastfeeding module, released in 2017, targeting childcare providers.
The Breastfeeding Peer Counselor Program helps promote breastfeeding. The program has paraprofessionals who were previous WIC participants and have successfully breastfed at least one infant. These peer counselors provide basic breastfeeding information and encouragement to WIC pregnant and breastfeeding mothers. Currently, 28 LHD WIC agencies, covering 72 counties, have a Breastfeeding Peer Counselor Program.
The data from the MCH nutrition branch indicate that hospitals are striving to support breastfeeding and provide education at the time of birth. However, there is a need to overcome barriers to providing support post hospital discharge. Concerns include low numbers of referral of new breastfeeding mothers to support groups, lactation specialists, or other resources to improve breastfeeding duration rates. There may be a lag time between discharge and the first WIC visit, so that a mother has already stopped breastfeeding before the first WIC visit. Also, there appears to be little consistency among hospitals in the rooming in protocols. Mothers may also experience a lack of support from other family members at home.
Nutrition Services plans to develop additional trainings on the new USDA WIC curriculum. When working with hospitals, they have requested that the state program assist with leading another initiative to complete additional steps and improve hospital practice and policy in support of breastfeeding.
Nutrition Activities
Many LHDs provide Medical Nutrition Therapy (MNT) services or nutrition counseling provided by registered dietitians and certified nutritionists on specific medical conditions and chronic diseases. With COVID-19, MNT visits dropped during 2020 and there was no group MNT education provided. There were 906 MNT visits done during 2020 with 904 of the visits being initial visits. Due to pandemic restrictions, only 2 follow-up MNT visits were conducted. The top five reasons for MNT visits included: obesity, Type 2 Diabetes, overweight, children plotting above 85% for BMI and underweight.
Since 2015, the KY WIC program enrollment percentage has remained relatively flat, decreasing only about 10,000 enrollees during that 5-year period. Prior to the COVID-19 pandemic enrollment count was approximately 120,000.
Enrollment in WIC services significantly increased during the COVID-19 pandemic. This was due, in part, to improvements in access such as the use of telehealth services extended care capabilities to individuals who need services due to the economic downturn.
The KY WIC Program offers the WIC Farmer’s Market Program (WIC-FMNP) in multiple areas across the state. WIC Participants, 5 months and older, may receive $30 dollars in WIC-FMNP coupons to spend on KY grown produce at their local farmer’s market. This program is available in 92 counties. Due to COVID-19, there was a decrease in the number of FMNP coupons redeemed and in the number of farmers and families who participated in the program in 2020.
KY WIC enrollment are relatively distributed evenly geographically, with the largest numbers of enrollees residing in the Louisville-Metro area. Other larger populated cities such as Lexington, Owensboro and Bowling Green have the next greatest number of enrollees. Rural counties, in Southeast KY have a high number of enrollees, where need is greater due to a more depressed economy. With the poverty level of most rural eastern Kentucky counties, the WIC program works closely with LHDs for ongoing WIC promotion and enrollment.
Louisville Metro Healthy Start
For more than two decades, Louisville Metro Healthy Start has invested in the health and wellbeing of West Louisville families by working with them to reduce perinatal health disparities, including infant mortality, via home visitation, case management and resource referrals for pregnant and postpartum women, fathers, and infants. Supports are designed to meet the needs of women across all stages of parenting: from preconception to pregnancy to postpartum, between pregnancies, and during a child’s first 18 months of life.
The Louisville Metro Healthy Start program has many strengths that support the mother/baby dyad, as well as fathers/families. These include:
- Support from 10 years of Community Advisory Council members, including current and former Healthy Start mothers and fathers;
- Home visiting teams are supported by registered nurses;
- Focus beyond just mother and child to include services for father and family;
- Breastfeeding initiation rate for Healthy Start Mothers is at 66%;
- 90% of participants have developed a Reproductive Life Plan (RLP);
- 80% of women and 99% child participants have health insurance; and
- 77% abstained from cigarette smoking during pregnancy.
Ensuring access to health care and well-woman visits, connecting parents to health insurance and medical homes, and removing barriers to education and employment help mitigate risk factors and enhance protective factors that improve the health of women, children and their families. The Louisville Metro Healthy Start services and resources include:
- Regular home visits by a Resource Worker utilizing interventions such as Beginning Guide curriculum;
- Wellness services, including family planning, Doulas, Cribs for Kids, nutrition services such as WIC, preventative screenings to identify early pregnancy complications, and mental health and other health screenings with appropriate referrals;
- Family Engagement services, including GED classes, Parent Leadership Group, monthly events, transportation to healthcare appointments and Neighborhood Place service centers;
- Maternal mental health education and group support provided by an African American LCSW with expansive experience in trauma-informed counseling and group work;
- Community Engagement Opportunities include the Community Action Network, Healthy Babies Louisville collective impact project, and the Community Advisory Council.
Louisville Metro Healthy Start offers specifically tailored supports during both preconception and inter-conception phases of participants’ reproductive life. During the preconception period, for example, home visitors discuss RLPs, provide an overview of birth control/contraception options, and maintain dialogue about reducing health risks from tobacco, alcohol, and substance use. Some 20 Healthy Start women enrolled in “Project Preconception Care,” or the Gabby System, developed by the Medical Center at Boston University and Northeastern University. Developed with and for young Black and African American women, Gabby guides participants through discussions designed to equip them with information and skills to maximize their health before they choose to get pregnant.
Inter-conception health is monitored among high-risk women, including chronic disease management and supportive, culturally sensitive RLP, all tracked using HRSA screening tools at each life stage; Prenatal, Preconception, Postpartum, and Inter-conception and Parenting.
All Healthy Start participants benefit from regular screenings for depression and anxiety using the Healthy Start screening tools and the evidence-based Edinburgh PDS. These take place during the preconception, prenatal, postpartum, and inter-conception and parenting periods at 6 months, 12 months, and 18 months. Over the last year, Healthy Start has increased its focus on mental health with the hiring of a Certified Social Worker and contracting with a Licensed Clinical Social Worker. Together they have served over 187 participants and hosted monthly community conversations on topics ranging from healthy eating to mental health.
Increasing focus on family and fatherhood has been a major priority for the Healthy Start team this year. Two African American men lead this work with a Coordinator, and a Resource Worker both dedicated to work with fathers. During the year, they have served more than 50 fathers and hosted monthly conversations on topics such as relationships, custody, and mental health.
The Louisville Metro Healthy Start has had challenges/barriers in the past five years. These include maintaining medical coverage, engaging women to seek prenatal care in the first trimester and retaining Healthy Start Clients. These are described in detail below.
Maintaining medical coverage is a challenge faced by many pregnant women both nationally and in KY. During 2020, Healthy Start saw a decline in health insurance coverage and in the number of mothers with a medical home due to the pandemic. In an effort to address this issue, Healthy Start staff worked to establish stronger partnerships with medical providers to allow for seamless connections to medical homes. In addition, for clients with no insurance, the home visitor assists in insurance enrollment.
Healthy Start plays a significant role in ensuring that women understand the importance of medical care, especially early prenatal care. They educate participants about the eligibility determination process for Medicaid and work with them to remove barriers, such as a lack of childcare and transportation. Staff are knowledgeable about community resources and linking program participants to different health and social services in the community. Healthy Start supervisors survey participants and Healthy Babies Louisville partners to identify and address experiences of discrimination and bias in health care and to ensure the availability of trauma-informed and culturally sensitive prenatal, birthing, and postpartum care. Additionally, Healthy Start is increasing preconception services, to equip more women with knowledge and tools to plan pregnancies, be healthy before pregnancies, and seek medical care within the first trimester.
The most significant barrier to the retention of clients is the Healthy Start participant’s perception of unmet needs based on the following: the home visitor may have not met participant’s expectations; program content and/or curriculum was not interesting or engaging to the participant; or the participant did not want visits after the infant was born. In addition, retention is negatively impacted by precarious housing and/or homelessness experienced by participants. To resolve this, the program works to meet participant needs such as: flexibility in scheduling, curriculum that address topics of interest for the participant, and more center-based opportunities for Healthy Start staff to meet with parents and children outside of the home.
Healthy Start benefits from two community partnerships, both of which involve women and men who participate in Louisville Metro Healthy Start. To prioritize participant voices, Louisville Metro Healthy Start hosts monthly meetings of the Community Advisory Council (CAC), comprised of current and former Healthy Start participants. The goal of this council is to create a space where Healthy Start families feel empowered and have a voice for the community. Over the years, the Committee has helped to develop outreach and recruitment plans, expand social media, and reflect strengths and assets of their neighborhoods. Participants have built helpful social connections through their work improving the program. CAC members also attend Healthy Babies Louisville (HBL) meetings and serve on program and policy work groups.
HBL is Healthy Start’s collective impact project focused on reducing disparities in perinatal outcomes through multi-sector partnerships. HBL has a robust membership inclusive of Healthy Start participants, community members, health and social service providers, and academics, who work on policy and practice changes supporting maternal mental health, doula advocacy, and paid parental leave. Much of this work has shifted to virtual as well during the pandemic. The community conversations led by Healthy Start’s mental health provider/LCSW were derived from the priorities set forth by the HBL network. Many of the panels consisted of HBL members. Working with the department’s MCH Coordinator, Healthy Start has restarted HBL using a virtual platform, grown the number of participants from organizations supporting families of color and community members.
Work with HBL partners will be enhanced and informed by ongoing collaborations with Title V MCH, the March of Dimes, and the Department for Public Health/Maternal and Child Health Division’s Social Determinants of Health Committee.
During 2020-21, the Title V-MCH team has worked with Healthy Start to build a community-wide response to reduce disparities in perinatal health outcomes, improve maternal health outcomes, and reduce infant and child mortality. Toward this end, Healthy Start reinstated the Healthy Babies Louisville (HBL) coalition. HBL uses a Collective Impact Framework, premised on the belief that no single policy, government department, organization or program can tackle or solve the increasingly complex social problems we face as a society. With the reintroduction of HBL, the focus is on the importance of community and working closely with the grassroot organizations, community members and families to achieve the goal of bettering maternal and child health outcomes in Jefferson County. The idea of “transformative change” is utilized to ensure that Title V-MCH initiatives and projects address maternal child health issues and barriers both comprehensively and holistically.
Healthy Start has worked to extend the reach of their mental health services, currently serving Healthy Start families only, to include the general public. The Community Healing Sessions will be open to birthing people and families beyond Healthy Start, starting in spring 2021. This series of healing sessions is guided by a team of mental health professionals to help birthing people ease pain, stress, trauma and grief they are currently experiencing and/or have experienced in the past. Sessions address mental health topics such as the superwoman complex, parent guilt, building a village, substance use and recovery among several other topics.
The Cribs for Kids Safe Sleep Program is an infant mortality prevention initiative that have provided pack n’ play cribs to Healthy Start parents as well as other families in the community, birthing hospitals and physician offices to distribute to patients and clients who are in need. This initiative enables the promotion of safe sleep environments for infants and help educate parents and families on the dangers of co-sleeping and bedsharing, which are popular cultural practices.
Social Determinants of Health CoIIN
Louisville Metro Healthy Start is a participant in the IM CoIIN for social determinants of health (SDoH), and the work of the KY team is to drive reductions in infant mortality by updating the Administrative Practice Reference (APR) to recommend addressing SDoH to improve health equity. Team members have made two presentations to IM CoIIN leaders, and have been active participants in monthly webinars and learning events about equity, systemic racism, and policy work. Team accomplishments include hosting five presentation/discussions about implicit bias, taping the presentation and posting it on KY TRAIN, and ensuring that the State MCH Conference has multiple sessions about social determinants of health and equity. The 2020 KY Perinatal Association-MCH Conference included a presentation to describe the tools that Louisville Metro Healthy Start uses to address SDoH and empower health care leaders from across the state to do the same. With pandemic restrictions, and the loss of the longstanding MOD maternal and child health leader, the SDoH MCH team was not able to meet as frequently. During the course of 2020, the work of this team joined with the larger CHFS Cabinet work to promote various trainings related to equity and racism and providing review of educational materials and handouts used in the “Just BREATHHE” campaign for CHFS employees. This campaign acronym “BREATHHE” stands for the mission of “Bringing Renewed Energy and Action To Health and Health Equity”.
MIECHV & HANDS
In 2020-21 families served through the Maternal Infant and Early Childhood Home Visitation (MIECHV) grant continue to show improvements in maternal and newborn health, school readiness and achievement, increased screening for domestic violence and referrals for victims of domestic violence, family economic self-sufficiency, referrals for other community resources, reductions in mother and child visits to the emergency room, and incidence of child injuries requiring medical attention. The Health Access Nurturing Development Services, or HANDS program, which is part of MIECHV overall, and which provides HANDS’ critical funding, continued to improve infant health outcome and reduce infant mortality in the families served. Additionally, HANDS continued to promote delivering a healthy baby by encouraging a healthy lifestyle and follow-up with prenatal providers. After birth, parenting education continues to support raising a healthy child in safe, healthy environments.
Safe Sleep Surveillance Annual Report
KY continues to focus on assuring safe sleep activities and review of cases meeting definition for the Sudden Unexpected Infant Death (SUID) case registry. KY chose to target NPM # 5: Percent of infants placed to sleep on their backs. From 2016-2019, 136 cases were reported as having been due to unsafe sleep factors.
SUID Case Registry work in KY has continued to enhance the capacity for local teams to conduct SUID case reviews; development and distribution of death scene investigation resources; data dissemination; and intentional, collaborative prevention efforts.
As shown in the following chart, sudden unexpected infant deaths appear to be trending down since the initiation of the SUID case registry. However, to determine if this result is related to the safe sleep campaign, data will need to be reviewed for a minimum of 5 years after the campaign’s implementation. As shown, there are periods of increased SUID death noted in the cooler Kentucky month of November. The SUID team developed an educational handout promoting safe sleep care of the infant in cooler weather.
Data and interventions from community partners are shared with the state SUID review team at the quarterly meetings and the CFR stakeholder meeting; and they are shared annually as part of the MCH updates during the MCH conference. MCH continues to support raising awareness and provision of education across the state.
Safe Sleep Campaign/Initiative
Beginning in 2015, KY began planning actions to reduce the SUID deaths with a media campaign. Plans for the campaign were time limited. However, because of the success and continued use and promotion by LHDs and others, the campaign is ongoing.
As recognized from parent survey data completed for the campaign, “D” for danger plays a vital role in addressing the safety risks that impact infant deaths from sleep deprivation, distraction, and impairment from substance to assuring the safe sleep environment for the infant. For this reason, promotion for the ABCDs of Safe Sleep are:
- A is for Alone: Stay close, sleep apart
- B is for Back: Babies should sleep on their backs at night and for naps
- C is for Crib: Babies should sleep in a clean, clear crib
- D is for Danger: Parents need to be aware and not impaired when they care for their babies
Ongoing supports from the Safe Sleep Initiative for LHDs, hospitals, and community partners include educational materials. One valuable lesson learned during the campaign was the need to refresh materials to assure ongoing engagement.
Additional educational materials are in development for use during car seat checks, EMS runs, and KY State Police waiting areas and for distribution by community partners. All materials were translated into multiple languages and have been shared with other states for use. Safe sleep magnets, crib cards, door hangers, and diaper bag tags are mailed to birthing hospitals across the state as free giveaways for new mothers. Prior to Covid-19 restrictions, the ABCDs were printed on tote bags and other infant/child safety materials were placed inside for use at fairs or when providing education or outreach to mothers, fathers, or other infant caregivers. In November 2020 multiple safe sleep materials were distributed statewide for distribution by local birthing facilities.
Ongoing discussions at local reviews center on prevention strategies, at some birthing facilities, the local coroner and community partners have purchased onesie imprinted on the back with “If you see this flip me over”. Others have imprinted the onesie with “I sleep Alone” to promote parts of the ABCDs of safe sleep.
During the campaign, MCH established a Safe Sleep KY Facebook page, website page, and email box. This page has remained active with a health program administrator monitoring all sites and responding with best practice information and promotional updates about safe sleep. More information can be found on the Kentucky Safe Sleep website at www.safesleepky.com
KY Pregnancy Risk Assessment Monitoring System (PRAMS)
The Kentucky Pregnancy Risk Assessment Monitoring System (PRAMS) grant collects information on infant sleep practices as part of their standard survey questions. KY received funding through a cooperative agreement to become a CDC PRAMS state in May 2016. PRAMS is a population-based random survey of women who have recently had a live birth. PRAMS data collects information on maternal attitudes and experiences before, during, and shortly after pregnancy and serves to fill gaps in existing MCH data sources. KY has entered into the fourth year of a five-year cooperative agreement for PRAMS.
PRAMS is the primary data source for informing prevention activities for NPM #5 and is critical for the monitoring and tracking of progress toward safe sleep practices among the general public. Additionally, data from the PRAMS opioid supplement, conducted in 2018, and the call back survey provided valuable information in understanding the risk factors associated with substance use during pregnancy. This year, 78% of PRAMS respondents indicated there were at least one risk factor present that could hinder safe sleep. The following graph shows the comparison between sleep practices of the general population taken from the PRAMS data to those of the SUID cases taken from case review. The comparison shows that 18% of mothers surveyed reported placing their infant to sleep on their side or stomach. More than 60% of mothers surveyed by PRAMS reported placing their infant to sleep on a surface that wasn’t designed for infant sleep. Hazards in the sleep environment, most often blankets, were the highest risk factor present in infant sleep for both PRAMS data and in SUID cases. Additional PRAMS response data include:
- 96% of mothers remember having a healthcare worker recommend placing their infant on their back for sleep.
- 83% of mothers reported following this recommendation.
KY PRAMS continues to face budgetary challenges for sustainment of the survey. The Division of the CDC that funds the state-level PRAMS programs received a funding reduction by Congress. Therefore, all CDC funded PRAMS states received a 10% reduction in funds for year two of the grant. KY, along with the other PRAMS funded states, had to reduce its budget by 10% for grant year two. It is unknown at this time whether funding cuts will continue in the future. In addition, due to these budget cuts, contracted staff at the CDC serving as state project officers became part of a workforce reduction. States served by these project officers were re-assigned to non-contracted staff for program management and technical assistance. KY recently began working with the newly re-assigned project officer. To continue the highly effective way KY PRAMS is functioning, PRAMS funding is augmented by Title V funds.
Safe Sleep Culture and SDoH
The question remains, “why would parents choose unsafe sleep behaviors that do not follow the recommendations from their provider?” Information collected on the PRAMS survey suggest that many parents place their infants to sleep on their stomach as an attempt to remedy gas and other stomach ailments, with comments like “don’t think I am a bad mom, he just sleeps better on his stomach”. Appalachian culture relies heavily on familial connections to tradition, quilting, and honoring the maker of the baby quilt, who is quite often a grandmother or an aunt of the infant. Following the childrearing example previously set by grandparents or other family members certainly plays a part in the decision to co-sleep as well as placement of the infant for sleep. When asked about the reason to follow these practices, statements are common like, “My mother put all of her children to sleep on their stomachs and we are just fine.”
Social Determinants of Health such as poverty, lack of safe sleep education, lack of a crib, substance use by provider or in the home, birth to a teenage mother, and other systems barriers contributed to SUID risk in KY. To address culture, SDoH, and other factors, MCH had to take a multi-pronged approach to the campaign.
Other areas of concern for SUID deaths are while traveling, when parents are away from their normal sleeping arrangements, or may not have portable cribs. Many LHDs partnered with local hotels/motels to place safe sleep materials in the cribs available for loan at these establishments, and to place safe sleep messaging on the back of the hotel door. Whitley County has asked the staff at these establishments to specifically ask the question, “Do you have a baby traveling with you today? Would you like a crib delivered to your room and set up by our staff?” as part of the initial registration process.
MCH Evidence Informed Strategies at LHDs
Title V funding supports evidence informed strategies specific to addressing infant mortality. To receive Title V allocations, LHDs are required to choose at least one infant mortality strategy and are encouraged to be creative with the packages to adapt and fit them to their local communities.
Evidence Informed Strategies chosen by LHDs:
- Safe to Sleep for Community Partners: 23
- Safe to Sleep for Child Care Providers: 18
- Prevention of Abusive Head Trauma Package: 29
- Cribs for Kids for Community Partners: 21
- All Safe Sleep Packages: 4
The Cribs for Kids package requires the LHD to find a match with a local community stakeholder to purchase an equal number of cribs. This past year, and as a result of COVID-19, MCH and LHD staff had to quickly adjust the way cribs were distributed to either picked up at a central location or be dropped off at the client’s home. This shift in distribution impacted the one-on-one contact with mothers, their babies, and family members.
Kentucky Perinatal Quality Committee (KyPQC)
Work begun in the initial year of the KyPQC, among the Neo and OB Workgroups, will continue in the upcoming year. The virtual KyPQC 2020 Fall Annual Meeting was a two-day educational and networking event that supported engagement with the KyPQC and collaboration within the perinatal care space. During this annual meeting, national and local experts spoke on substance use and management of NAS; including CDC’s Dr. Wanda Barfield who presented “Neonatal Opioid Withdrawal Syndrome and Health Equity.” Dr. Barfield described state level initiatives and highlighted social determinants of health that impact neonatal withdrawal syndrome. Nearly two hundred were in attendance on one or both days of this event, with a majority of birthing hospitals represented.
The KPQC working to review the data on NAS and look at any gaps in information known. KY has a robust surveillance system that meets statute. This work will hopefully help inform best practices for improving hospital plans of safe care with a warm handoff to the pediatrician or other providers.
The Neonatal (Neo) Workgroup of the KyPQC began working to review the data on NAS and look at any gaps in information known. In KY, NAS is a reportable condition and DPH houses a robust NAS surveillance system that meets statute. This workgroup focus is on standardizing protocols and treatment management of infants diagnosed with NAS across the state of Kentucky. The Neo Workgroup developed a NAS Reporting Baseline Survey to understand what influenced reporting practice in KY. Based survey results, the Neo Workgroup decided the first initiative is to decrease the percentage of birthing hospitals under-reporting or not reporting NAS cases. Concerns, as stated by the birthing hospitals, was largely related to obtaining necessary details of the NAS case, as these details were often documented in two different records (mother’s medical record and infant’s medical record). Because of this barrier, data reported to the state NAS registry could potentially be inconsistently reported. The Neo Workgroup in consultation with MCH began development of guidance and training for standardizing NAS reporting among birthing hospitals on how to submit related data. The Neo Workgroup developed a Key Driver Diagram that details the drivers and interventions for this first initiative.
Ongoing initiatives of the Neo Workgroup is to develop future guidance regarding standardization of treatment and management of infants diagnosed with NAS as defined in the ACOG Maternal Safety Bundles.
Neonatal Abstinence Syndrome (NAS)
In KY, data from hospital discharge records indicate the number of cases of NAS has increased nearly 20-fold in the last decade (46 in 2001 compared to 907 in 2017). Mandatory reporting of NAS to MCH was instituted in July 2014. Annual reporting for NAS began in 2015 and has continued since (see attachment).
Per the KY NAS registry, in 2019 the rate of NAS was 20.9/1,000 live births. This rate is much higher than nationally reported rates. Rates are highest in the Appalachian or eastern area of the state with some areas reaching nearly 56 cases per 1,000 live births.
Mothers of infants tend to have lower levels of education, be unmarried, and have more children, which may suggest lower socioeconomic stats, a lack of social support, or reduced access to services. Approximately 65% of cases in the registry used more than one type of substance during pregnancy.
KY is at the center of an injection drug epidemic that has brought with it the highest HCV infection rate in the country. Hepatitis C was reported in about 36% of this population.
Infants with NAS are twice as likely to have a low birth weight and three times as likely to be admitted to a neonatal intensive care unit. Tobacco and alcohol use co-occur with substance use at higher rates compared with the rest of the population, which could further affect the health and development of these infants. Infants with NAS had a longer delivery hospitalization: 13.4 days as compared to 3.8 days for infants without NAS.
About 85% of infants with NAS were referred to the Department for Community Based Services, and 76% of those cases were accepted. Data from other KY programs indicates that NAS is a risk factor for abusive head trauma and unsafe sleep. Further studies are needed on maltreatment and mortality among NAS cases.
To prevent NAS, the KY Department for Public Health recommends continuing to promote prenatal care; promoting enrollment in MAT programs; implementing a plan of safe care including educating parents and medical/childcare providers on safe sleep and abusive head trauma; modeling safe sleep practices in hospitals; enrollment in services such as WIC and home visiting; and improving access to long-acting reversible contraception. This past year, both HEART & HANDS, to programs that grew out of KY’s plan of safe care, in the face the COVID-19 pandemic, continued to work in an effort to address NAS in KY.
MCH contracted with Mountain Comprehensive Community Mental Health Center to have consistent Peer Support Specialists on staff. Staff continued to meet on Zoom due to the pandemic and meeting for a shorter time due to being online. MCH purchased an iPad to keep at the local hospital (Highlands ARH Regional Medical Center) to complete intakes with women who have delivered and are interested in the HEART Program as well as continued to work on increasing referrals. Additionally, MCH is in the process of advertising for a new program coordinator position.
The widespread nature of the substance abuse epidemic in KY is challenging with. COVID-19 has exacerbated the problem by most estimations. When focusing efforts on treatment options for pregnant and parenting women, the need far outweighs capacity. From a data standpoint, there are challenges to obtain accurate numbers using administrative data sources. Another significant concern is that some babies with NAS may be discharged from the hospital before onset of symptoms, resulting in a potentially high-risk situation for the infant. NAS has been identified as a risk factor for infant deaths, especially for sudden unexpected infant deaths with unsafe sleep practices as well as pediatric abusive head trauma. These findings highlight the critical need for a comprehensive plan of safe care that assures a safe environment after discharge from the birthing hospital.
Newborn Screening:
Newborn Screening (NBS) is a mandated service provided by the state of KY. Parents have ability to ‘opt-out’ and refuse screening. NBS rates for both metabolic/genetic blood spot screening and critical congenital heart defect (CCHD) screening are completed for 98% or greater of KY newborns annually. Beginning in 2017, the Division of Lab Services (DLS) contracted with a private courier to collect blood spot specimens across the state and deliver them to the lab. Previously, DLS utilized the US mail and Fed-Ex services for shipment of specimen. This created a delay in the ability to timely respond to some disorders and increasing risk of death for newborns with critical disorders. By using the courier service, DLS has successfully improved timeliness for receiving, processing, and reporting results out on specimens.
MCH houses the Short-term NBS follow-up program. This team assures timely notification to the university referral centers for early evaluation and diagnosis. This team completes follow-up and notification to parents and providers for any specimens requiring additional labs or repeat specimens. Rates for lost to follow-up for repeat labs was impacted by an inability to locate provider and lack of provider notification of case closure to the state, despite being required in regulation.
To address the rising rate of lost to follow-up; changes were made in the follow-up procedures. In 2019, these changes resulted in a large decrease in cases lost to follow-up for lab specimens requiring additional labs for final determination of referral needs.
NBS follow-up cases rose with the additional of other disorders to the state metabolic panel. Likewise, the number of cases that did not meet referral criteria, needing additional lab determination also rose at an exponential level.
In the course of the past 18 months, NBS follow-up was successful in reducing lost to follow-up rates for both repeat lab specimens and in keeping the For those infants identified, the referral lost to follow-up rate at 0.01%.
In 2020, there were several challenges that NBS confronted as a result of COVID-19. State emergency plans were inclusive of continuity of NBS follow-up. These plans did not have protocols in place for remote work of staff. Program staff and leadership quickly met, and developed new communication processes, and utilization of the electronic reporting, and records management to ensure ongoing timely referral and follow-up while allowing staff to work remotely.
Hearing loss is the most common birth defect, occurring at a rate of three in every 1,000 children. The OCSHCN administers newborn hearing screening program. The Early Hearing Detection and Intervention (EHDI) screening surveillance is located at the OCSHCN. The goal of KY’s newborn hearing screening program is to identify congenital hearing loss in children by 3 months of age and assure early intervention by 6 months of age. In KY, 98.3% of newborns receive a screening prior to discharge from the hospital. This rate is slightly above the national average of 98%.
This program provides supports for birthing hospitals to:
- Establish protocols for testing, reporting, and training
- Set standards for screening based upon national best practice standards of care
- Provide quality assurance consults from audiologists
Family supports include:
- Care coordination for tracking and follow-up for infants referred after screening
- Audiology consultation to help locate diagnostic, medical management, hearing aid assessment, and funding services and linkage to early intervention services
- Direct audiology services at 11 OCSHCN regional offices
- Connections to parent support groups
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